Disability and Genetic Intervention

Developments in human genetics offer the prospect of correcting or preventing impairments by means of genetic intervention. Of course, this would eliminate only impairments that are genetically based; it is irrelevant to impairments with other causes.

One use of genetics—testing for genetic abnormalities followed by the abortion of affected fetuses—was addressed above. There are also other uses. One may screen prospective parents for deleterious genes, and the carriers may choose not to reproduce or to have children by using donor gametes or transplanted embryos. In the future one may be able to modify the somatic genome of an existing person to eliminate impairment or modify a person's germ-cell DNA (the genome of a person's eggs or sperm) to prevent disabling impairments in future generations.

Because no life is terminated in these procedures (not even that of an embryo), there is no ethical objection to them from the perspective of the right to life even among those opposed to abortion in general. The ethical concerns that arise for selective abortion against a prochoice background, however, also apply to genetic techniques that prevent the conception of impaired fetuses, although with less force. For example, choosing not to have children or to use someone else's gametes to avoid producing a disabled child might express an attitude that devalues the disabled, although merely using contraception would do that less forcefully than abortion does. Programs of gamete donation and embryo transfer and techniques for altering genes in utero also would reduce the size of the disabled population and the number of participants in subcultures composed of people with particular disabilities, just as abortion does.

However, techniques that "switch off" or replace deleterious genes in living people or in gametes or fetuses that will be allowed to develop have a special defense against such criticisms. First, it is hard to see what could be wrong with treating a gamete, fetus, or already-born individual to correct or prevent a disabling impairment. This would be like treating a child with antibiotics to keep an infection from causing blindness, which is surely legitimate; it is a form of healthcare. Second, individuals who were denied available interventions and went on to develop disabling impairments would have moral grounds for complaint. The claims of disabled people not to be incrementally marginalized by decreases in their numbers and not to be given a discouraging message must be weighed against the claims of other individuals to receive an intervention that spares them from grave disadvantages. To deny them this would be to make them bear a disproportionately steep cost to protect the sensibilities of others.

On the basis of either a liberal or a strictly egalitarian theory of distributive justice, Norman Daniels and others argue that citizens of an affluent industrialized society that spends heavily on healthcare have a right to a broad package of efficacious healthcare services (Daniels; Buchanan et al.). If genetic intervention in living individuals becomes a reliable form of healthcare (once it is beyond the experimental stage), it will become the type of treatment to which such citizens have a right, according to these theories (Buchanan et al.), and failure to provide it will be not only a failure of compassion but an injustice.

There are significant risks in altering the somatic-cell genes of a single individual because the biological processes involved are so complex and the environment may interact with the changed genome in unexpected ways. However, for the most part it is only the individual who is at risk. There is further risk in changing a person's germ-cell DNA so that the change is transmitted to all that person's descendants. The new genome may give rise to new impairments when it is combined with the genes of others during reproduction or in response to shifting environmental influences. Because the technology for those procedures does not exist yet, one can say only that the ethical legitimacy of germ-line intervention to prevent disability will depend on the range of risks involved in each particular procedure. Great caution here is morally obligatory.

EQUAL HUMAN RIGHTS. Western philosophers argue that all human beings, in spite of their many obvious differences in strength, intelligence, and so forth, have equal fundamental human rights. Equal human rights always are thought to include noninterference rights such as the right to autonomy or self-determination and the right to freedom. They often are thought to include rights to goods or services as well, such as the right to a minimum amount to eat or a basic education. Philosophers offer different grounds for these moral rights.

For Immanuel Kant (1996 [1797]) human beings have such rights because they possess reason, including the capacity for rational choice in regard to action. Many recent authors follow Kant in proposing as the basis for the possession of equal rights criteria that depend on the psychological properties of the rights holder: the being's conceptual capacities, its control of its behavior, its emotions, or its capacities for reciprocal social interaction.

Social contract theories such as that of John Rawls (1971) offer a different basis for equal rights for all human beings. Jeffrie Murphy, following Rawls, says that "an individual should be understood as having a right to x if and only if a law guaranteeing x to the individual would be chosen by rational agents in the original position" (p. 8). The original position is a hypothetical situation in which a group of rational agents comes together to agree unanimously to principles and practices to govern their community. Each participant is self-interested, may care deeply about some (but not all) of the others, and knows in general what can happen in human lives but is "behind the veil of ignorance"—does not know his or her future or what his or her role in society will be. Those to whom the items in question are guaranteed need not be rational.

RIGHTS OF THE MENTALLY DISABLED. According to theories that base rights on psychological features of the prospective right holder, mentally competent people with physical disabilities have the same fundamental human rights as other competent adults because they fulfill all the criteria that have been propounded as the bases of human rights. Inability to walk or see does not deprive people of rationality, the capacity for informed choice, or the ability to interact reciprocally with others. According to contractarians, those people also have rights equal to those of the nondisabled because people in the original position know that they themselves might become physically disabled and thus would agree to protect the disabled in their possession of many goods.

In the psychologically based theories, however, a problem arises for people with severe cognitive or emotional disabilities. As Lois Weinberg (1981) points out, these people will not develop the capacities frequently cited as the grounds for equal human rights, such as the capacity for rational choice (in the severely retarded) and the capacity to interact reciprocally with others (in the sociopath). According to these philosophical theories, such individuals do not have any fundamental human rights; but that is implausible. At the very least those with mental or psychological disabilities have the basic human right not to be physically abused, and some argue that they have human rights to minimal care and an appropriate education. Giving them those things is not merely an act of compassion but also one of justice, it is argued, and hence a matter of rights.

The contractarian approach fares better. Murphy (1984) argues that rational agents behind the veil of ignorance would agree to guarantee a certain level of security and training for the mentally disabled because they know that they might become mentally disabled or might have a much-loved mentally disabled child. They would not guarantee autonomy protections to the mentally disabled but would guarantee them rights to basic food, shelter, and freedom from abuse.

AUTONOMY/NONINTERFERENCE RIGHTS AND RIGHTS TO AID. Noninterference or autonomy rights are the rights of rational persons who are capable of deciding their destinies to be left alone to do that: rights not to have others deprive them of life, liberty, or legitimately owned property (Locke, 1975 [1699]). Even for contractarians the full range of these rights belongs only to rational decision-making creatures because of their capacity to guide their behavior through their choices.

Mentally normal people with other types of disabilities are rational choosers, and so there are no grounds to deny that they have noninterference/autonomy rights. It is unjust to coerce them in the making of important life decisions, for example, to subject them to forcible sterilization. Mentally disabled people, depending on the severity of their impairments, may not live up to the standard of rational decision making needed to qualify for noninterference/autonomy rights. Some ethicists think that therefore people whose mental disabilities are significant do not have the moral right to make their own decisions about medical treatment, life-skills training, and finances. Those decisions are rightly made for them and should be made in ways that serve their interests. Others defend some autonomy rights for the mentally disabled.

Apart from noninterference rights, various authors claim that the disabled have the right to have a great assortment of goods and services provided to them by the rest of society. This may include life aids (ventilators and wheelchairs), attendant care, special education or training, the rebuilding of public structures, and income support (for food and shelter and also for healthcare in countries where healthcare is not subsidized for all). It is controversial which, if any, of these things are owed to disabled people by right and on what conceptual basis.

RIGHTS TO THE MEANS OF INCLUSION. For Anita Silvers (1994) all persons, or perhaps all who are mentally competent, have equal rights to participate fully in society on the basis of their individual dignity and self-respect. If any are excluded, justice requires that the barriers to their participation be dismantled or bridged. Thus, equality rights are the grounds on which the disabled have a right to be provided with the means of inclusion. Barriers to full participation are conceived broadly: The lack of a teacher for the visually impaired might qualify as a barrier to a visually disabled child's full participation in her or his school. Thus, the removal of barriers consists not only in the alteration of physical structures but also in the creation of new structures or devices and the provision of trained personnel. The disabled have a right to these things solely because of their right to equal participation, which in this view is a right that everyone has. This equality right to devices and services that remove barriers does not include the right to income support, however, because people do not all equally have that right solely on the basis of their equal dignity and self-respect. Silvers (1995) argues that once disabled people are granted equal access, they will earn their own living. If a few severely disabled people have a right to subsistence support, that has a different and nonuniversal basis.

However, a contractarian view treats the right to the removal of barriers and the right to income support as being on a par. In a contractarian view both are based on the protections rational agents would agree to for their society when choosing behind the veil of ignorance.

Thus, Gregory Kavka (1992) argues on the basis of both Hobbesian and Rawlsian social-contract theory that in advanced societies people with significant disabilities have a right against society that it provide, where feasible, the accommodation, equipment, and training needed to permit the disabled to engage in the productive processes of their society and thus earn an income. The Rawlsian version of the argument says that people in the original position would agree to improve the lot of society's least-advantaged members and that the disabled are among the least advantaged because of the disadvantage inherent in their disabilities and the barriers and prejudices they face in society. The most effective way to better their lot is to give them access to self-respect, which in modern societies depends greatly on work and career identification. Income support will not provide the same basis of self-respect, and so it is not the best means to achieve this end. Thus, although Kavka argues for the subsidized removal of barriers to employment, if the provision of food and shelter were the most effective way to better the condition of the least well off, that is what he would defend. Murphy's argument, similarly appealing to the original position, defends the provision of food and shelter to the mentally disabled.

Vigorous counterarguments are made against these arguments that society should provide the disabled with the means of inclusion. Philosophers who reject Rawls's theory of distributive justice attack the relevant premises. A different sort of counterargument claims that it is too expensive to provide all the goods and services needed by the disabled.

Although giving disabled people access to full social participation would enable many of them to earn a living and not depend on welfare payments, it is an economically inefficient solution, they say, because it would be cheaper to provide income support for all disabled people. Society could use the savings for other important purposes. This need not be a selfish argument; the savings could be used to provide free healthcare to the poor or to build better schools.

Various replies are offered to the efficiency objection. The basic structure of the argument is utilitarian, and it may be criticized on those grounds. The cheaper policy may increase the well-being of some elements in society, such as taxpayers and the nondisabled poor, but may yield a far lower level of well-being for the disabled than would inclusion, and no evidence is provided that the net well-being of all the persons affected will be higher with the less expensive policy. Alternatively, the argument may be rejected on grounds of justice: It may be less expensive to provide nothing but income support, but it is unjust to deny disabled people the bases of self-respect that come from inclusion in society.